Let me start by saying I am NOT a doctor or medical professional! I am writing this post to simply share my story and my experience.
Growing up I was an active kid. I loved everything from dance and gymnastics to softball and snowboarding. I have struggled with stiff joints for as long as I can remember but when it was brought to my doctors attention they chalked it up to the beating by body took from gymnastics.
During an eighth grade ski trip I fell getting off the lift and injured my right wrist. The pain landed me in the ER and after no fractures appeared in an X-Ray the doctors determined that I tore my meniscus. I was told that I needed six weeks of immobilization for it to heal and they sent me home in a cast from my wrist to just above my elbow. Those six weeks were some of the longest, most uncomfortable of my life and when I finally got the cast off the pain was much worse. My pediatrician recommended that I see a rheumatologist at Children’s Hospital. After months of pain and a laundry list of blood tests I was diagnosed with Mixed Connective Tissue Disease. Turns out, my meniscus was in tact and had they ordered an MRI it would no only have saved me six weeks in a cast but led me to the proper diagnosis.
On one hand I was relieved to know that it wasn’t normal to feel exhausted all the time and to wake up with stiff joints and muscles that felt like elastic bands. On the other hand, I was pissed. I was fourteen and getting ready for my freshman year of high school. Why was this happening to me, what did it mean and why did it take so long to diagnose?
What is Mixed Connective Tissue Disease?
Mixed Connective Tissue Disease (MCTD) is a rare systemic inflammatory rheumatic disease that affects the body’s collagen & elastin. Individuals with MCTD have symptoms that overlap with two or more autoimmune diseases which makes it difficult to diagnose and complicated to treat.
My symptoms are most common with systemic lupus, rheumatoid arthritis and scleroderma. As I get older, my symptoms have changed and so has my course of treatment but at first my symptoms were as follows…
- Fatigue: I was exhausted, no matter how little or how much sleep I got.
- Swollen joints: Most mornings I would wake up with swollen hands and feet (which my boyfriend lovingly refers to as “sausage fingers”). And it was hard to move my joints. There were some mornings where I wasn’t able to open my hands, move my wrists/ankles or straighten my arms/legs)
- Raynaud’s Disease: When your fingertips turn white and go numb due to poor circulation
- Rheumatoid nodules: Red, raised bumps that are extremely sore to the touch
My Initial Treatment
What makes MCTD unique is that it can’t be treated as a whole, you must treat the symptoms as they appear. So I was loaded up on steroids, immunosuppressants and anti-inflammatories and at first they made me feel so much worse. Prednisone made me gain weight instantly, I was exhausted during day but wired at night and I was so emotional. Everything either made me angry or brought me to tears – there wasn’t much in between. Methotrexate is a form of chemo but in small doses it is used to treat autoimmune diseases and doctors will not try any other course of treatment until you’ve tried this. I started to lose my hair – it would come out in fist fulls in the shower and I would be nauseous for hours after taking it. Eventually I was switched over to the injection form which my poor mother had to give me once a week. I would yell at her and cry and beg her not to give it to me. I begged my doctor to try something else, anything else but he wasn’t open to letting me be involved in my course of treatment. I was so angry. Angry at my parents for making me see that doctor and take that medicine, I was angry at the doctor for not listening to me, and everyone who couldn’t understand what I was going through.
Doctors told me the best thing I could do for myself was keep moving so I continued to cheer (not exactly what they had in mind but I wasn’t going to let them take that away from me). I used cheerleading, tumbling in particular, as a way of keeping my body moving and releasing all my anger. When my body would allow it I would push it to the absolute limit. I tumbled at any chance I got, for as long as my body would allow and it is what go me through some of the hardest years of my life.
After high school I stopped cheering and became less active and my health took a turn for the worse. I couldn’t work or go to school and was even bedridden for a period of time. I bounced around from rheumatologist to rheumatologist until I found someone who would listen to me and let me have a say in my treatment. At this point I was taking as many as nineteen pills a day and I had no idea which ones were working and which ones weren’t. My goal was to start from scratch. I became my own advocate and managing my disease became my full-time job. It has been a long road and I’ve made many mistakes along the way but I am finally on the right path and I have an amazing doctor overseeing my care.
What I’ve Learned
- Everyone has an opinion on everything and will give it to you whether you’ve asked for it or not! Some of those people are know it all’s, some just want to share their experience. You don’t have to bite everyone’s head off – just smile, thank them and try what intrigues you.
- Do your research! Know your disease and what triggers your symptoms. There are many symptoms that can be treated by changing your diet, daily routine etc.
- LISTEN TO YOUR BODY. Your body will talk to you so pay attention. I wrote everything down which helped me when it came time to make decisions about medications.
- No one knows your body better than you do so speak up! Be your own advocated and don’t take no for an answer.
How Yoga Has Helped Me
When I first tried yoga I didn’t like it. I was a gymnast and a cheerleader and I loved high intensity workouts. I couldn’t deal with the music, the breathing, the pace and savasana could not go by any slower. The only thing I enjoyed about it was the heat. Bikrim Yoga has a set series of 26 poses that are done in a room heated to 105 degrees Fahrenheit and 40% humidity. Turns out, that is TERRIBLE for someone who has an autoimmune disease that effects connective tissue. The heat gives your body a false sense of flexibility leaving you susceptible to injury and doing the same poses every time is not good for your joints. I was strongly encouraged to try a vinyasa flow class. Who knew there were so many different styles of yoga and where the hell do I find a vinyasa class? A family friend recommended a studio that had opened up at Legacy Place so I decided to give it a shot. Stil Studio was beautiful! The staff that greeted me was welcoming, the studio space was behind this gorgeous barn door and the room was set to a comfortable temperature, the instructor was gentle and encouraging but the parking… a nightmare! It gave me so much anxiety that it took me half the class to calm down and I decided I was only going back if I could get someone to go with me. Fast forward a few years and I decided to give it another shot. The Easter Bunny (aka Ryan) gave me a five class pass to get started with a routine and off I went (this time parking in the garage and avoiding all the madness and anxiety in the lot)! The studio had moved to another part of the mall to a larger space and it was even more beautiful! The staff was just as friendly as I remembered them to be and I tried a few new amazing teachers but it took me a while (and by a while I mean two years) to get into a routine.
I tell my students all the time that it’s okay if you don’t like yoga at first, I sure as hell didn’t, and as corny as it sounds I believe yoga found me when I was open and ready for it. At first I started going once a week while I was out of work, and man I forgot how good it felt to just move my body! Once a week quickly turned into twice which turned into three times which turned into almost every day if my schedule would allow it. As I started working again I even created a schedule around the classes I loved.
I was stiff and awkward and even a little uncomfortable at first and I began to question whether this would really help or was it some hokey bullshit that I was buying into. I read a lot of articles like this one on the benefits of yoga and sure enough, the more I practiced the better I felt. Yoga was promised to get my blood flowing, lubricate my joints, increase flexibility and it delivered! Slowly but surely my muscles began to open up and I heard less cracking in my joints when I got out of bed but it delivered on so many levels I wasn’t expecting. I was sleeping so much better, my pulmonary functions tests were improving (I was actually taking full, deep breaths), I was a little less anxious and a little less reactive. Yoga became my drug of choice and I couldn’t let a day go by without it, even if that meant just a few minutes at home by myself. So, in 2015 I decided to deepen my practice and complete a 200 Hour Teacher Training.
How My Practice Has Changed
Throughout the last seventeen years my symptoms and flare ups have changed dramatically. It has caused my treatments, daily routine and even my career paths to change and adapt. What worked for me ten years ago, six months, even a week ago might not work for me right now. It is one of the reasons I am so grateful that I found this practice. I am only human and I lose my shit just like everyone else but for the most part it keeps me calm. I have learned the importance of being quiet and listening to my body – knowing when to slow down and when to kick it up a notch.
The gymnast in me loved the idea of arm balances and inversions and having flexible enough hips and hamstrings that I could get my legs behind my head. And there was a part of me in the beginning of my practice that wanted to prove that even with my health issues I could still do those beautiful poses. But yoga isn’t about getting that perfect Instagram picture, it’s a spiritual practice about self realization. It’s about taking care of yourself mind, body and soul. I have learned that there is so much beauty in simplicity and it’s amazing the things you learn about yourself when you move slow and breathe deep.
Photos by Meghan Walsh